In Sickness And In Health…

In sickness and in health… regardless of religion or cultural background, this vow usually makes its way into most wedding ceremonies. But how many of us in our relative youth at that time, actually truly understand what those words mean. “In health” is the easy part of course but what happens when unexpectedly some sort of chronic, serious illness decides to intrude on your perfect union?

That’s exactly what my husband Arun and I faced over fourteen years ago. We were married just five years when my symptoms began. And despite my desire to hide my head in the sand, he’s the one who encouraged me not to ignore the tremor. He was the one I ran to, my eyes full of angry tears, after the first neurologist had the gall to tell me he felt I had young onset Parkinson’s. He sat holding my hand when months later the second well-renowned movement disorder specialist confirmed this life sentence despite my desire to be absolved from the initial diagnosis.

He listened to what my physicians were recommending and took care of the practical side of things when all I heard were words and nothing was registering. And he was the one who [...] continue the story

The Man Who Couldn’t Eat

By Jon Reiner

This feels so illicit. And stupid. But really, I must lick this french fry. I’m not asking to eat it, mind you, that wouldn’t be good. I just want to lick it. Taste its salt. I cower in the kitchen, hiding from my wife and boys, who are out there, on the other side of the door, enjoying a sumptuous dinner, like eaters do — devouring what’s delicious, picking at what is not, saving room for dessert — while I starve.

Yes, I’m starving. There’s been nothing for two months now. No food, no drink, nothing in my mouth except the air I keep sucking. It would be plain to say the hunger is driving me mad, because it is. I crave food more than sex. The smell and touch of food can drop me to my knees. Food left me suddenly, in the chaos of emergency surgery, and, empty of food, I think about it constantly, an obsession that magnifies the ordinary into the surreal. A simple french fry is a wonder, an uneaten crust of bread salvation; something as unattainable as a fried egg, life itself. This trance is not healthy, or normal, but then those two [...] continue the story

When Walking Like A Chicken Becomes A Problem

the morning of saturday september 18, 2010 i woke up like always…. SLOWLY… i am not a morning person at all… i hate waking up… it takes me forever… and talking? don’t even think about it…at least for an hour… i have such a fog in my noggin that i can’t even begin to process a conversation let alone a little short sentence. coach has figured this out… he’s one of those disgustingly happy people when he wakes up… instance bounce… ugh.

i laid in bed for a minute to get my mental bearings when it dawned on me…. gotta pee…. i gradually moved my legs to the side of the bed, and over…. so far so good…. i stood up… and was going to walk into the bathroom… like i have done all the 16,364 (give or take a few) other days of my life…. only one problem… my feet wouldn’t go forward! holy hell… they would only go up and down… like an idiot marching in place and increasingly worried that i would pee right there on the floor…. panic!

but only briefly…. after about 6 or 8 marching steps i moved forward….whew! i make it onto the pot… sitting [...] continue the story

White Cane and Wheels

Paul Apelgren wanted to make a film about his Aunt Carmen and Uncle Steve. Carmen wanted the film to be called Soul Mates. Steve wanted the film to be called Gimp Love. The film shows they’re not your normal relatives, they’re outspoken, genuine, and hilarious. They also face tremendous hurdles on a daily basis. The simplest of tasks are extremely difficult. Carmen has Retinitis Pigmentosa. She is ninety-five percent blind and what little sight she has left is going fast. Steve has Muscular Dystrophy. Two years ago he could still sit up; now he can barely wind his watch. His illness is terminal. Carmen says, “Hopefully people won’t feel sorry for us and all that crap because it’s so annoying.” They see their life as a movie, a love story. Carmen and Steve met in a disabled acting class after a run of failed marriages and relationships. The film is an intimate look at the power of love and how it sustains two people who by all measures seem like they cannot make it. As the story progresses it becomes clear that things are “not all peaches and roses.” Especially when the biggest obstacle is the floor. Tensions run high. Carmen is the [...] continue the story

Breathing Lessons

ACADEMY AWARD WINNER! According to Mark O’Brien, “The two mythologies about disabled people break down to one: we can’t do anything, or two: we can do everything. But the truth is, we’re just human.” O’Brien was a frequently published journalist and poet, and a contributor to National Public Radio. He contracted polio in childhood and, due to post-polio syndrome, spent much of his life in an iron lung. Yet for more than forty years, he fought against illness, bureaucracy and society’s conflicting perceptions of disability for his right to lead an independent life.

Breathing Lessons breaks down barriers to understanding by presenting an honest and intimate portrait of a complex, intelligent, beautiful and interesting person, who happens to be disabled. Incorporating the vivid imagery of O’Brien’s poetry, and his candid, wry and often profound reflections on work, sex, death and God, this provocative film asks: what makes a life worth living?